Full text of GCTA CEO’s speech at Ministerial Conference

Blessina Kumar, CEO – GCTA, spoke on behalf of the community and civil society at large at the 2nd High Level Plenary – Accelerating to End TB: Perspectives of Civil Society and TB Survivors on Day 1 (November 16, 2017) of the WHO Global Ministerial Conference in Moscow. Full text of Blessina’s speech is below

Moderator – We’ve heard experiences of people who have survived TB, you are a TB survivor yourself but have transformed your experience in a powerful way to one of advocacy through your work with the WHO Civil Society Taskforce and the Global Coalition of TB Activists. Tell us about your work and your insights on how civil society can be
a strong and valuable partner alongside governments in end TB efforts?

Blessina — The TB response that I saw when I started working in global advocacy was extremely medicalized. The human side was completely missing. You could be talking about anything when you talked about TB. The voice of the affected, the TB survivors was completely missing. Unlike the HIV world where the movement was led by the community by the people living with the disease. Historically TB is seen as a disease of the poor and so has the response been. Not a priority. But things are beginning to change slowly but surely. Bold policies and guidelines and the thinking among the larger TB community that is all of us is changing. But if we are thinking of ending TB this slow change will not do. We all have committed to
ending TB and this means taking the ‘bull by its horns’. One of the first things to do is accept that we have a huge emergency on our hands and we need to prepare like we would for war! When you want to fight a fire you do not use drops of water but a full blast. Do we dare? Do we have the courage? I believe the answer to that is a yes! What does this mean?? – Addressing the huge gaps with urgency. No time to loose.

• Invest in affected communities/CS as partners in TB response and engage to inform policy towards equitable, rights-based, patient- and community-centric response
The biggest gaping hole in our response is the inability to engage and invest in communities . What does patient centered care mean? Our response needs to be equitable, the needs of those who are most vulnerable should be the priority. The response needs to be in a way that respects the rights of the patients. Many of our good intentions fall short of this. This also means that the community is involved in setting the agenda. The affected community, the TB survivors have a lot to offer, TB policies will need to be informed by the community with an understanding of ground realities. This can become a win win situation for all.

• Update and implement policies in line with WHO recommendations and in accordance with the Rights to Health and Science
There are bold policies but these will need to be implemented in line with WHO recommendation. Part of the patiect centered rights based approach is to make sure this happens. Every one should have the right to health and the right to science.

• Increased investment by Governments and donors in R&D for TB prevention, rapid diagnostics, shorter and safer treatments
Prevention is an area where we haven’t focused much. The response needs to start much before the onset of cough. We have forgotten the simple infection control measures in communities, education, awareness, counseling etc. Tuberculosis will cost the world economy close to $1 trillion in lost economic output by 2030, unless countries step up efforts to fight the disease, according to a report launched today by the Global TB CAucus. The disease cost the world more than $600 billion from 2000 to 2015. According to the report, the most economically affected region will be Asia-Pacific ($573 billion from 2015 to 2030), followed by Africa ($303 billion), Europe and Central Asia ($64 billion), and the Americas ($42 billion). At the current rate of progress, the SDG’s target of eliminating TB by 2030 will be missed by 150 years, and an additional 28 million people will die within 15 years, according to the report, which was produced by KPMG based on figures from WHO.

How can we allow lives to be lost every second to this curable disease?? It is unacceptable. We cannot afford not to invest in R&D, for a vaccine, for rapid diagnostics, for shorter safer treatments.

We know that to end any epidemic we need a vaccine yet our investment and will is far from what is really needed.

TB Research remains gravely underfunded. The STBP Global Plan to End TB calls for 9 Billion USD over 5 years – approx. 2 billion annually, in 2016 only 8% of that was available for TB research!

We urge the BRICS countries to invest more.
Global Coalition of TB Activists, GCTA
I have the honour and previlege of heading the first and only global paltform of people affected by TB. We have members in all the different regions of the worls and have 4 regional focal points, changing the Tb narrative to be people centered and community led. We have a membership of over 300 members affected by TB and its steadily growing. One of the major acheivements thi year has been the establishment of the Regional Coalitions. Asia Pacific , Africa, latin Americ and the Carribean and Europe.

WHO CSTF: (12 members selcted from across the globe)
Formed in 2016, the task force contributes to the implementation of the End TB Strategy with particular focus on social protection and universal health coverage and advocating their inclusion in national TB strategies and plans, national social programmes and political platforms (e.g. parliaments) and regional and global platforms of policy dialogue.
TB today has the attention like never before. There are high profile events such as this on TB that provide a pivotal platform for countries to take action, to work together, to pledge concrete financial investments in R&D, to include the affected community and to make the dream of a TB free world a reality!!!!

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